There is so much I didn’t know about Nathan at the onset of his diagnosis. No one did. The specialists tried to explain what it would be like to parent a medically rare, special needs child. Their explanations were scary and largely unhelpful.
But there is so much they can’t, and never will be able to explain. We were fortunate enough to have one neonatologist tell us, “Go ahead and learn every single thing you can about Cri du chat syndrome. Everything. Then throw it out of the window and become a student of your son. He will tell you everything you need to know.”
Lots of advancements are happening in the world of genetics right now. A new prenatal test will be able to detect five genetic disorders, one of them being Cri du chat syndrome. The problem is that no geneticist or prenatal test could tell me what I truly need to know about Nathan anyway. Those scientific results could never tell me that he would be a little boy who is so sweet to stare deeply into my eyes and bury his head in my chest wanting a full body cuddle. A boy who will click his tongue at me or grunt like a bear to get my attention. A boy who gets feisty when he wants to do something on his own or explore this world we all live in. He is a very special boy entangled in a disability.
These are the most important things I could only learn by loving him:
He makes good eye contact.
He cuddles up under my chin if he wants to be held or rocked.
He clicks his tongue to get my attention. A click is also an affirmative, like if he were to say “yes.”
He makes kissing sounds as if to say “I love you.”
He also waves and says “bye-bye.”
He is able to grunt like a bear and oink like a pig, when he wants to. He can also stick his tongue out like a lizard. (Brother basically taught him that.)
He signs the word “eat” even though he is taking the majority of his calories through a feeding tube. This kid gets so excited to get just a taste of puree baby food.
He signs more and utters “Eh!” which means eat.
He gets feisty when he wants to do something on his own and he’ll throw himself toward an object he wants to play with.
He giggles on the trampoline so much that he can’t stop laughing.
He’ll stretch out his arms for a swing if he’s within reach.
He loves things that spin. We call those things his “spinner” toys.
He turns pages of board books.
He says “Mama.” That’s me.
He signs “please” and looks at the object he wants. He’s very polite.
He gives high fives and plays peek-a-boo.
He smells delicious after a bath.
He looks adorable all decked out for dinner or church.
He knows his name.
He knows the name of Jesus.
His favorite toy is his ball. His speech therapist and I swear that he babbles “want my ball” though not many would hear it the same.
He loves bubbles and will say “baba” when you blow them to him.
He loves Elena of Avatar and will sign the word for “doll” to request her.
His signs for “outside” and “all done” look similar but you can tell the difference because he will beeline to the door if he wants to go outside.
He thinks anything his big brother (also “baba”) does is hilarious and gets us all belly laughing along with him.
He can identify the following body parts: head, eyes, ears, mouth, nose, and feet.
He uses his walker functionally at school, church, and therapy.
He eats about a tablespoon of pureed food by mouth three times a day for breakfast, snack, and dinner. He also eats Puffs broken up into tiny pieces.
He will put words together to say “Mama, go bye-bye.” (I personally think that counts as a sentence.)
He puts his hands together when you say, “Let’s pray.”
This is who Nathan is.
All of the little abnormalities and rarities in his body and mind don’t shake me like they did when he was a baby. They’re not so abnormal anyway, they’re uniquely Nathan. And what he can’t do, is what he can do. By his nature, he models dependence. Dependence on others and dependence on God. That is a gift he gives to those who know him and are willing to learn.
Diagnosis day ultimately changed me. Though a geneticist gave me no good goods about my son, I’ve had to patiently wait to know the little boy who is slowly emerging out of his diagnosis and into the [rare] person God intended for him to be.
There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love.” – 1 John 4:18
Today is World Rare Disease Day. Care about rare!
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
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